Not So Much with the Shame

The second visit to the developmental pediatrician went much better than the first. I think last time was so bad because of three things: the doctor’s stressful day, his tendency to over-teach (I may have just made up that concept) combined with the presence of medical students, and my propensity to feel shame at the drop of a hat. Only one of those is on me.

This time there were no students in the room, just the three of us and the doctor. He started by going over his findings and recommendations for BamBam. He told me that the lab we used was CLIA certified and was pleasantly surprised that I had verified that on my own. When got to discussing blood tests and DNA, he started to explain interstitial deletions and stopped when he saw me nodding. He said, “You…?” I pointed to myself and said, “Genetics.” and he just nodded and went on without the quiz or big explanation. I can’t tell you how much I appreciated that. Sparky may not have*, I didn’t think to ask him, but I can explain it to him later if he wants.

So, much better. Still don’t think I’d give the guy any awards for communication style, but a big improvement nonetheless. And in his report he said that I “work full time as a stay at home parent.” if nothing else had improved, he’d still get humongous points for that.

He said his findings for BeBop would be pretty much the same as for BamBam except for the metabolic stuff. I don’t think I mentioned that before, so I’ll talk about it now. He noted that BamBam has slightly course features and very long eyelashes. Those features combined with his delays could suggest that he has a metabolic disorder. I’m not really concerned about it since my dad had course features and long eyelashes. The doctor agrees that it’s a remote possibility, but it’s something that should be ruled out early because if he does have one it needs to be addressed like yesterday. I’m in total agreement about that.

We got a referral to biochemical genetics and have an appointment in two weeks. When I first called, I was transferred to their genetic counselor for the intake information. She was trying to figure out which clinic to set him up for, biochemical genetics or medical genetics, and was explaining the difference when I thought to stop her and tell her I used to be a genetic counselor. She said, “That makes sense because you seemed to be understanding this really quickly.” Then later she asked if there was any family history of genetic disorders. I told her there was nothing of significance for this. She said, “You know, it’s really great to be able to take you at your word on that.” I felt pretty good about it, too.

Today Sparky and I are going to our initial meeting with the folks at the Autism Center for BeBop. It’s a different place than we took BamBam for evaluation (he went to the Care Clinic) and they seem to be more thorough. They require more appointments at the Autism Center anyway. They’ll meet with just the parents today for 90 minutes. Then they’ll meet with BeBop twice for two hours each time. Then just the parents again for 90 minutes to go over the results. The Autism Center is where we will take BamBam to have him re-evaluated in a few years, as the Care Clinic report suggested. Not that we take him elsewhere, just that we have him evaluated again once he has more communication. The place we’re going today, the Autism Center, is where we saw the developmental pediatrician, so they now have records for both boys. It will be nice not to have to send that all in again in a few years. Anyway, the appointment to get BeBop’s results is June 30.

So, no new word on anything about the boys yet, but I’m hoping to have lots of info at the end of June.

*Sparky says he still doesn’t know what interstitial means, but he’s fine with that.

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3 Visitor Comments

Diva
June 7, 2011

Good plan. I bet it is nice for these practitioners to talk to a parent with a professional background in genetics counseling–less handholding and no vocab lessons! If it were me i’d be the annoying woman who kept making them repeat and spell things while i took notes…

hope the autism center is fantastic. the preliminary appointments sound kind of grueling to the uninitiated, honestly.